WASHINGTON - With billions of dollars in diabetes research on the line, a 12-year-old from Central Florida is headed to the nation’s capitol to tell her story.
"Traveling is definitely way more difficult with diabetes. It's been six years since I've been on an airplane," Claire Goodowens said.
Goodowens has been active in raising awareness about the rising costs of insulin in the weeks leading up to her trip.
"Because we're so close to a cure,” Goodowens said.
All 160 delegates attended a hearing named, "Redefining Reality: How the Special Diabetes Program is Changing the Lives of Americans with Type 1 Diabetes," featuring testimony by two members of the JDRF Children's Congress.
"And if they haven't found a cure for T1 diabetes by then, I will," Ruby Anderson, age 9, said during her testimony at the hearing.
A similar effort from the Juvenile Diabetes Research Foundation happens every two years to renew funding for the Special Diabetes Program (SDP).
“It shouldn't really be something that we have to renew every two years. It really should just be something that's like, OK we need research for this, it should just go until we find a cure," Goodowens said.
Currently, each part of the SDP is funded annually at $150 million dollars.
The money goes to the National Institutes of Health to continue advancements in technology like continuous glucose monitors (CGMs), the artificial pancreas, and beta cell therapy.
The latest bill called for five years of funding for research.
The JDRF delegates involved in Children's Congress also met with U.S. senators and representatives to share their personal experience and ask for support for the SDP renewal.
"I went to Marco Rubio's office, and then Stephanie Murphy,” Goodowens told us about the itinerary for her third day of Children’s Congress.
And her stories with News 6 have already caught the attention of Florida’s newest senator Rick Scott.
"All the things she has to do differently than all the other kids," Scott said.
Scott is one of 68 senators and 378 House members offering support to the first five-year extension of the Special Diabetes Program.
Scott also introduced the Transparent Drug Pricing Act, which would require drug companies to charge American patients the same prices they do Canadian and European patients.
Scott called it “common sense.”
"The price of these drugs is just it makes no sense, and plus this has been around a long time, insulin has, why would the price go up like it has,” Scott said.
A bill to renew SDP for five years was approved by the House Energy and Commerce Committee one week after the hearing. If it does not pass in a vote, the SDP will expire in September.
Goodowens is challenging everyone to take part in a social media awareness campaign called the #StickTogetherChallenge” on July 24.
She wants people to test their glucose and record the experience to share on Facebook, Instagram and Twitter to raise awareness about the everyday struggle of people with Type 1 diabetes.
Copyright 2019 by WKMG ClickOrlando - All rights reserved.